Posts Tagged ‘Neurodiversity’

Many thanks to Regan Foster of The Pueblo Chieftain for so thoughtfully and skillfully presenting our ongoing struggle in trying to get Harrison some behavioral help. It is truly the story of a healthcare and mental-health system that is entirely broken and does not serve those in need.

Regan’s story will be Exhibit A for our appointment with an administrative law judge on March 21 to appeal a decision by the state to deny Harrison a Children’s Extended Services (CES) waiver for Medicaid. He was denied basically because his sleep habits, though not great, are not entirely horrible. Even if our appeal is upheld, the victory would be meaningless, as CES will not cover behavioral services beyond June.

Meanwhile, our insurance company, Cigna, after first denying that they cover ABA therapy in 2017 (and also erroneously denying we ever called), has changed its policy as of Jan. 1. Now they do “cover” behavioral therapy — with a $3,000 deductible and a 30 percent co-pay — which is the same as not having insurance at all except that we’re paying for this privilege.

As a side note it’s difficult for me to hear myself saying “But he’s never hurt anybody” when I know he left me with a nearly paralyzed arm and shoulder for about two months in 2013-14, and has nearly knocked me out with head-butts. I also have seen the bruises of others who love him, including Mary, and his teachers and aides, so I must have intended something else when I said that. Maybe he’s never “intentionally” hurt anybody would be more accurate.

Most of you know I’ve been writing extensively about this topic of autism parenting for years in my columns, blog, books and on Facebook, but it was fun to hand this ball off to Regan and see someone else’s perspective. GO READ it here.

I have to thank fellow blogger Neurodivergent Rebel for cluing me in to a term for something I’ve experienced several times but had no word to describe.

That term is “dyscalculia.” I can now add this to my son Harrison’s spectrum of neurodiversities that also include autism, ADHD, OCD and probably Tourette Syndrome.

While I don’t find labels particularly helpful, I do find it useful to have a term for something I’ve witnessed over and over. Somehow, knowing this term helps me to better understand this neurological difference.

Dyscalculia is largely thought of as difficulty with mathematics, typically the basics of addition, subtraction, multiplication and division. But it can also have implications in calculating time, sequence, spatial awareness, distances and speed.

I believe I first noticed this with Harrison having problems changing clothes. He would sometimes get things out of sequence. For example, in the course of getting dressed for school, he might take off the fresh shirt he’d just put on when the next step was to put on his socks. Or he might take off his shoes when I’ve asked him to put on his jacket. I’ve seen dozens of versions of this over the years but never had a word to describe it.

Another example of Harrison’s dyscalculia is in relation to time. Despite his obsession with clocks and certain points of time, like lunch time, his concept of time as a continuum and ongoing sequence, particularly as it pertains to tasks that must be accomplished within a certain timeframe can be . . . well, warped.

It also may explain his uncanny ability to learn music through sound rather than notes on sheets. It could also explain why he can run forever without tiring.

While getting things out of order while getting dressed can be comic, and learning music by sound is genius, dyscalculia can also manifest in situations that are dangerous. It’s a concern with higher-speed activities that may involve other moving objects or vehicles, such as with cycling or even running. Before I had a word to describe dyscalculia, I wrote about this experience in my book “Endurance.” Here’s the excerpt about an incident following cross-country practice last year when Harrison insisted on crossing the highway on his own.

“ . . . When we got back to the car Harrison now wanted to cross the highway “unsupervised” but I insisted I had to be there. He objected mightily to this but I refused to give in. So we walked over to the highway, about 50 yards from where we’d parked the cars. He looked carefully both ways, waited for a car to pass, then ran across. Then he turned around and crossed back over. He crossed it again and looked both ways.

There was a UPS truck and two cars coming from the west. I watched him and he watched the UPS truck go by. Then he waited for the second car. Then, just as the third vehicle was approaching, he started to take off.

I couldn’t believe what was about to happen. I was right on the edge of the white line. There was no way I could jump out there in time so I yelled sternly: “NO- NO-NO!!!!” He looked up at me and I could see the gears turning. I briefly had the thought he might just keep running out of defiance.

But he pulled up.

The car passed between us at about 65 mph. Never even slowed down.

There was no time for an adrenaline rush before Harrison completely flipped out and came barreling across the highway at me. He slapped, scratched and hit at me and spit on the ground, shrieking and yelling the entire time. His teammates who had finished their workouts stood watching all this. At last he calmed enough that I was able to get him back to the car and drive away.

After he had settled down. I asked him about what had happened there. Did he not see the third car? He answered in a painful voice that, yes, he did see it. So then I asked why, if he saw it, had he started to run anyway? He answered that he did not know why. The only thing that I could guess is that some confusion in sensory-processing system — sound, sight and movement — had overwhelmed his motor skills and sense of executive function. Thankfully, the life force had over- ridden all of this.”

I can now chalk this experience up to dyscalculia, and add it to the complex spectrum that governs the way Harrison processes and reacts to information from the world around him.

Last week I decided I probably should break the news to Harrison that his principal would be retiring at the end of the school year. We were driving when I told him this and there was some thoughtful silence in the back seat.

After a while, he asked, “Who will take her place?”

Without going into detail about changing job descriptions at the school, I told him that Mrs. Camper would be in Mrs. Anderson’s office next year.

More thoughtful silence . . .

“But will she be as nice as Mrs. Anderson?”

Harrison and Principal Holly Anderson

I assured him that she would be, but this exchange suddenly brought another reality into focus. As Harrison’s dad I’ve probably had more interaction with Holly Anderson than most other parents during her years at the school. She arrived right as we were beginning to see some heightened behavioral issues due to Harrison’s autism. Early on he would spend time in her office to chill out when he was having problems, when he was feeling overwhelmed, or needed a quiet place to focus on his work. As time went by Holly also called me several times to bring him home due to extreme misconduct.

I can tell you there’s nothing quite like being called to the school and the principal’s office because your child has, for example, struck out at a teacher. It’s a feeling of despair combined with the effect of someone driving the Indy 500 on your nervous system. It was during these times that I really learned to appreciate Holly for her skills and abilities.

She was always naturally calm regardless what had happened. She seemed to have a way of projecting this calmness to Harrison, and also to me.

Then, when we sat down to discuss whatever had happened, she spoke to Harrison with an astonishing clarity, using language that was on his level but without speaking down to him. In this way she could encourage him to accept and take responsibility for his actions without instilling any hint of guilt or humiliation for what he had done.

The next day when I brought him back to school she would welcome him with a smile and the opportunity for a fresh start. Whatever had happened was not simply swept under the rug. Instead it was used as an opportunity for growth and learning.

I don’t know Holly outside of the school setting at all. But it is my sense she operates from a foundation of hope, kindness and compassion. As such she has been not only an important influence for our kids, but also for parents such as myself and her fellow educators. Her work carries on as a lasting gift to the school, the larger community and beyond.

I know Harrison is going to miss her, and I am grateful to have learned so much from her as well.

Sometimes we try very hard to control things and it only makes matters worse. This is particularly true when working with beings who have a streak of wildness running through them, like myself for example.

This has recently been drawn more tightly into focus with three wild souls I am working with — Zip, Jimi and my son Harrison.

Zip is an Australian Cattle Dog. These dogs are descendant from wild dingos from Down Under that were bred with English herding dogs to become what we know today as “heelers.” We typically keep Zip on a leash because he tends to run wild when off it. However, the more we keep him leashed, the more he wants to run free.

Then there’s Jimi, a burro foaled in captivity from a wild Bureau of Land Management jenny. He’s larger than most burros and spent a lot of his early existence in the open at a mustang sanctuary, and was initially “handied” in a round pen. Now he views any open range as an opportunity to bolt.

And then there is my son Harrison, The Blur. He’s my son, so the wildness is built-in. But since he’s neurodiverse — he has autism — we’ve had to keep a very close eye on him since he was very young. Since his behaviors can be quite random and range wildly, and it’s difficult to know what’s going to happen next in any given situation, we tend to hover over him, and also help him maybe too much with simple tasks.

With all three we’ve set up situations in which we’ve taught them what they can do by showing them what they can’t do. In our minds, it’s all about safety, but it’s also about control, which is really an illusion — we really don’t have as much control over things as we think we do, if any at all, and eventually the dog is going to get loose, you need the burro to be dependable out in the open, the Blur is going to be in social situations on his own, or need to complete his school work.

Here are some tips that I’ve learned from others and from my own experiences. They may be helpful in working with dogs, burros and people:

You need to have more time than they do. Get yourself in a hurry or a frantic rush and you are setting yourself up for disastrous results. Plan ahead and start early if you absolutely have to be somewhere on time (I’ve been known to start the night before). Or be prepared to be late — I often stop, take a deep breath, and drive Harrison in to school late if I feel his getting ready on his own is more important than being there on time. Is that time on the clock just another illusion

Make it easy to do the right thing and hard to do the wrong thing. For example, in the video above you can see Jimi trotting along a road with no fenceline on the right. The rope is clipped to the halter not the bridle and he’s traveling in a straight line. However, to get this to happen, he is pointed toward home, it’s on an uphill where he can’t easily get away, and there is a very steep sidehill on the right. It’s easier for him to just run home in a straight line at my pace than it is to turn and bolt up that hill.

Find some way to make them think the correct behavior was their own idea. It’s difficult to get Harrison to do his school work, but he is very much fascinated with clocks these days. The other night he came home with a writing assignment about clocks, a stroke of genius on behalf of the staff at school. He did this work without any encouragement — even his handwriting was neat.

Positive reinforcement goes a long way. I’ve been “rewiring” Zip to run off-leash. For this, I take him over on the trails on nearby Bear Basin Ranch which is a safe environment.When I let him off the leash, I keep him in “referencing distance by sometimes whistling. Occasionally, I stop and call him. When he returns I pat his head and scratch behind the ears and praise him. This way he gets the idea that coming when called does not mean he is automatically back on the leash. He’s still a long way from running off-leash out on the county road but this goes back to the long-term version of our first point about having more time than they do. I’ve also been experimenting with taking him along with one of the burros. Having a burro along appeals to his stock dog instinct and makes him want to stay close.

In fact, yesterday when returning from the ranch I removed the lead rope from another donkey I’m training, Teddy, and used it as a leash for Zip. Then I let Teddy run free back here while Zip herded him along on the line. Advanced animal training — they both seemed to think it was their idea.

For more insights about the parallels between helping animals and autistic people achieve triumph in life, check out my book, Full Tilt Boogie.

Recently while we were out on a run, Harrison asked me, “Hey, what kind of autism do I have?”

I tend to zero in on questions like this as I find his developing self-awareness and the perception of his own neurodiversity fascinating. It was like a few months ago when he asked, “At what age is autism put into the brain?” (Think about that one.)

I was pretty sure what he meant by asking what kind of autism he has, but just to be sure I quizzed him about what he meant by that. He clarified by asking if his autism is mild, moderate or severe.

I then explained as best as I could that it’s really not that simple. While we tend to think of the autism spectrum as a linear shaded bar chart with mild on one end, moderate in the middle, and severe on the other end, that’s a really overly simplistic view.

Truly the autism spectrum is not linear but more accurately depicted as circular. On the outside of this circle are certain characteristics like language and motor skills, sensory perception, and executive function. Social skills and awareness are other variables with autistic people. All people are more or less functional in each of these traits. The best diagram I’ve seen is cartoonist Rebecca Burgess’ illustration.

And here’s the really complicated part — all of these traits affect each other and are dynamic, changing from moment to moment.

So I explained to Harrison that in some ways and at some times he can be mildly autistic and at some times and in some situations he can seem severely autistic. For example, his executive cognitive function, which governs impulse control, sometimes is severely lacking.

More complex, and difficult to understand, is how deficits in one area can produce deficits in others short-term. For example, impulse control issues that lead to a tantrum can directly affect motor skills. A good example of this occurred this past weekend when we participated in a two-part photo shoot for a magazine cover to accompany an article I’ve written about his participation in cross-country and track.

The first sequence of photos was an evening shoot. Harrison was thrilled to participate, was joyful and ran beautifully for the photographer, back and forth with great form for about an hour.

He set his alarm for the next morning’s session but when it went off it was louder than he expected (perception) and this startled him (sensory) which sparked an epic tantrum (executive function and impulse control) which ultimately resulted in poor running form for the photo shoot (motor skills).

That’s the type of autism Harrison had that morning. A totally different “spectrum” from what he and I experienced the previous evening.

It had been a relatively rough week for Harrison at school back in early December. The short weeks of school sandwiched between a 10-day break for Thanksgiving and 17-day holiday vacation are difficult for him to process, plus there were some other adjustments being made to his academic program due to his repeated disruptive outbursts in class. The biggest challenge for his neurodiverse brain is impulse control.

I wanted to do something to help him get back on track. That’s when I saw Don Richmond was playing a show at the SteamPlant on a Thursday evening which is the last day of the school week here. Coincidentally, it also happened to be the day we appeared in Christopher McDougall’s “Well” column in the New York Times.

I first saw Don perform at the Taos Plaza, and then again in a show at the Center for Inner Peace in Pueblo.

Over the years a couple of Don’s CDs have found their way into various of my playlists, particularly his album “Like Lazarus.” Among other things Don has won the Governor’s Award for Creative Leadership in the state of Colorado. I could go on and on about Don but you’ll find out much more about him here.

Back to Harrison, whom I sometimes call “The Blur,” a nickname explained in my book, Endurance. He loves music. I thought if he could keep it together for a day at school, perhaps I would surprise him with a trip to Salida for Don’s concert. That day, I stayed in contact with his aide Rebekah throughout the day, explaining that I wanted to reward him for a good day but not place any pressure on him because he tends to obsess on such things — a minor slip can quickly escalate to a major meltdown if he thinks he lost the prize.

The risks for me were not minor. It’s a 1 hour and 20 minute drive each way to Salida. The trip would mean dinner out at a restaurant. The price of the show for was not an insignificant amount. Plus, I knew if he had an issue during the show I would have to remove him from the theater.

After school I learned he’d had one minor slip-up just before the bell but Rebekah said she thought he’d had a good enough day to have earned the surprise.

I sat him down in the resource room and told him what I had in mind, and that he would have to agree to certain behaviors right now if we were to go to the show. This included being quiet in the car for the drive, proper manners and behaviors at the restaurant, and no disruptions during the show.

He agreed to all these conditions, so away we drove into the early December sunset toward Salida.

We went for dinner at Amica’s. Contrary to conventional wisdom,a fairly noisy and busy restaurant environment is actually a better place to take Harrison than a quiet one. It’s easier for us to blend in and if he makes noise or has some other issue it’s not as apparent. My friend Brandy was our server and she is always so incredibly kind. Harrison was perfect in the restaurant, and Brandy even allowed him to help her make a sundae for dessert.

After that, we headed on over to the SteamPlant. It was a chilly night outside and as we approached the doors he took off at a run, excited to get to the show.

A woman at the front door heard his footsteps and stopped to hold the door for him. I was close behind, walking quickly. As The Blur ran up to the door she looked at him. Then she looked up at me. There was a look on her face as if she had just seen something that doesn’t really exist, a fiction that had suddenly come to life.

“Wait . . . I . . . know who he is,” she said smiling. “I recognize you guys . . . I read about you in the New York Times today.”

I felt sort of embarrassed at this random notoriety and just smiled and muttered something like, “Yep, that’s us!”

Inside I quickly realized Harrison was not just the only autistic child at the show. He was the only kid there. Period. I saw my publisher Mike Rosso from Colorado Central magazine and he suggested we check out the side-balcony seating, which turned out to be a really great tip.

We climbed up the stairs, found the little balcony completely open and took our seats. At last the show began, and Harrison began singing along right away. After a few tunes, local musician Bruce Hayes joined Don on the stage, accompanying on the mandolin. It was clear Harrison had “cataloged” all of Don’s songs — he knew not only the lyrics but also which album each song was on. Except for singing out a bit loudly and also some minor throat-clearing due to some sort of sinus issue he was having he was behaving perfectly. I was glad we were in that little balcony so as not to disturb the other concertgoers.

At intermission, I took Harrison down to the stage and introduced him to Don. The Blur was thrilled, and since he had a full catalog of Don’s songs right there in his head he requested two that Don had not yet played. Don replied that one of those two songs, “Me and Everybody I Know” already was on his setlist and he would try to play the other request, “Awake,” if he had time to fit it in.

I saw the potential train wreck in the making right away. So after we got back into our seats, I explained to Harrison once again the rules we’d agreed to and that Don would do his best to play both songs, and for sure would play one, but that he could “deal” if Don didn’t play both.

The concert began again. At some point Bruce again accompanied Don, and then another fine regional musician, Tom Dussain, joined the show. Harrison was thrilled when they played “Me and Everybody I Know,” and then the countdown began. I could feel the angst building in the chair next to me, and there were some minor exclamations as the show wound down and none of the final songs were “Awake.”

Of course none of this was Don’s fault — he wasn’t there to play requests and had no idea the obsessive nature of Harrison’s mind.

As the show ended, Harrison jumped up from his chair, grabbed his jacket and determinedly headed for the stage.

I was quick after him and was able to divert him at the bottom of the steps. My attempts to block him from getting to Don quickly turned to a bit of a wrestling match as I tried to guide him toward the exit, narrowly missing bumping into an elderly woman with a walker during this fracas. In the hallway leading out to the lobby I literally had to restrain Harrison, and a woman walking past asked, “Is everything OK here?”

I replied that “No, it’s not but we’ll get through this.”

Right then the man walking with her, I’n guessing her husband, said, “Yes, everything is fine.”

Then she asked him, “How do you know that?” as they walked away.

I was too concerned with getting Harrison out of the SteamPlant to worry right then about what anyone else thought of the situation, but I am sure it does appear odd to some people to see a grown man wrestling a 12-year-old kid out of a theater, and they probably don’t know what to think or do.

Once outside The Blur took off running down the sidewalk to the car. I followed behind. It was a cold night and I remember sitting down in my seat and focusing on slowing my heart rate before slowly driving away. Not a word was said the entire drive home. I reflected upon how our exit was so much different than our entrance.

All the way down the Arkansas River canyon I stewed over my mind’s story about how Harrison had managed to “ruin” an otherwise perfect evening. Why did I even try to take him to something like this? What was I thinking? I wrestled with my own questions about how I had handled the situation after the show, and how I had responded to the woman asking if everything was OK.

About at Cotopaxi, as I turned from U.S. 50 to the winding road that takes us back up to the Wet Mountain Valley, I suddenly had an epiphany. I remembered the good moments from the evening. I remembered Brandy smiling as Harrison helped with dessert. I remembered the woman’s smile at the Steam Plant door when she recognized him from the New York Times. I remembered realizing Harrison had memorized entire albums. I remembered Don kindly reaching out to shake his hand. Like the unsung song, I was suddenly “Awake.”

The truth was Harrison had not wrecked the entire evening. He’d merely had an episode that made for a few uncomfortable moments at the end. I took him there because I am his father and I want him to have great experiences as a child. He did not totally disrupt the show. Nobody got hurt.

Furthermore, I handled the situation as best as I could under the circumstances, and nobody was questioning this other than my own mind. As for the woman’s question about everything being OK, I appreciate her concern and am sorry that I could not produce the words to adequately explain at that time with my arms and mind so full what was actually going on there.

What I should have said is this: “Yes, everything is just fine here. We’ll be just fine.”

To borrow just slightly from the writer Thomas McGuane, camping in your own backyard becomes with time, if you love camping, less and less expeditionary. When summer vacation hit, the camp stove seemed more like a campfire than it ever had before, and the Suzuki hatchback more like a pack-burro.

In this case the back yard was the San Luis Valley. I’d promised my son Harrison a trip to the Hooper Pool (as it’s known by locals) and the nearby Great Sand Dunes National Park and Preserve as a reward for his outstanding finish at the Hardscrabble Mountain Trail Run, which I help organize. He placed third in his age group, and as far as I know was the only kid with autism in the race.

So one day we packed sleeping bags, pads, tents, cook kit and food for an overnight father-son excursion . . . Read the rest.

T.S. Eliot wrote that “April is the cruellest month,” but then he was not referring to a calendar for autism awareness.

Each year I greet the proclamation of Autism Awareness Month as a source of amusement and with a sense of duty. The fact is, every day is about autism awareness around here.

Actually, I have been doing my best to avoid using the term “autism,” though this is nearly impossible when writing about it. Instead, I prefer “neurodiversity.” It is more accurate for one thing, less of a label and more inclusive. Read the rest of the essay.